Long Covid: Some experts warn against ‘experimental treatment’

• The number of long Covids is increasing worldwide, impacting the physical and mental health of sufferers.
• Some experts worry that desperate patients are spending all their savings on an unproven therapy.
• But other researchers and doctors say it’s not all black and white, as clinical trials can take years.

The long-term effects of Covid-19 are having a huge impact on the lives of thousands of people around the world, as many previously highly functional people are now weakened and depressed, unable to work and struggling to return to life. their original state. – Covid Routines.

Common long symptoms of Covid include fatigue, difficulty breathing and sleeping, chest pain, muscle weakness, memory problems, anxiety or depression and loss of smell and/or taste. Unfortunately, there is still no internationally recognized treatment pathway for long Covid.

Any potentially promising treatment therefore presents a silver lining for the long haul. One such therapy, known as ‘blood washing’, is offered in private clinics in Cyprus, Germany and Switzerland.

In an article published in The BMJ (British Medical Journal), a couple of experts say the therapy, which would have cost a patient more than €15,000 (R257,995), is experimental at this stage, questioning whether it should be offered without sufficient evidence. The report was written by BMJ Surveys Editor Madlen Davies.

But the article has generated considerable reaction and interest from the public, including long-time patients, experts and researchers.

The treatment

Therapy involves blood-thinning medication and HELP apheresis – a blood filtering treatment normally used for patients with lipid disorders.

According to a press release, with apheresis treatment, needles are placed in each arm and blood is passed through a filter that separates red blood cells from plasma. The plasma is then filtered before being recombined with the red blood cells and returned to the body via a different vein.

The survey was conducted by The BMJ and ITV News, explaining that one of the patients who tried the treatment was a trainee psychiatrist in the Netherlands, who was forced to resign due to her symptoms.

She found out about the treatment through a Facebook group for long-time Covid patients and traveled to Cyprus where she received six cycles of apheresis, nine cycles of hyperbaric oxygen therapy and an intravenous infusion of vitamins at a nearby clinic.

She went home with no improvement, the article reads, but other people reported favorable results after the treatment.

Clinical trials are needed

Internal medicine physician Dr. Beate Jaeger treats long-term Covid patients with apheresis at her clinic in Mülheim, Germany. Talk to The BMJshe acknowledged that the treatment had been experimental for a long time with Covid, but explained that the trials take several months to complete, while there are thousands of patients who are currently desperately ill.

“If someone is desperately ill and you have no other way out, you are allowed to treat them if they accept treatment,” she said. Patients whose lives are profoundly affected by the disease have also said they cannot wait years for trial results.

It’s not black and white

Existing research indicates that small clots in the blood block the flow of oxygen through the capillaries, causing long-lasting Covid symptoms. Jaeger pointed to research on this topic carried out by Professor Resia Pretorius, head of the Department of Physiological Sciences at the University of Stellenbosch.

According to BMJ report, Jaeger and Marcus Klotz, who also set up a long-running Covid clinic in Cyprus, used this research to justify treating patients with apheresis and triple anticoagulant therapy.

Pretorius spoke to Health24 last year about the research she and her colleagues were conducting. They found that participants with long-lasting Covid had microclots that were resistant to lysis (the breaking up of clots).

“These micro-clots, we discovered, contain molecules that prevent lysis inside. This means that if the person has these micro-clots, and if this molecule that we found inside the small clot is present, then the clots don’t break up. And we believe that this clotting is at the heart of the persistent symptoms,” she said.

That wouldn’t be the only reason for the post-Covid state, but Pretorius thinks it’s an essential part of the pathology of long Covid. They are therefore continuing their efforts and working on a diagnostic tool to detect these micro-clots, which could soon be deployed in hospital pathology laboratories around the world.

The need for clinical trials

Experts, however, said The BMJ that further research was needed to understand how these micro-clots form and whether they are indeed responsible for the disease.

But Pretorius, who has long called for clinical trials, said that according to the authors’ report, six long Covid patients had positive results, while only two patients did not improve.

“Everyone with remote mental health is calling for trials,” she told Health24. She added:

“They visit the apheresis clinics because there have been excellent results for some. They are desperately looking for some kind of cure. It’s such a horrible situation for the patients. Hopefully the trials will soon be to prove or disprove; we desperately need it,” she added.

Pretorius is currently working with researchers at a British university who have repeated his and his colleagues’ methods and said their (British) collaborators are planning two clinical trials.

Not practical to wait for results

A Manchester respiratory doctor who has long had Covid said The BMJ that physicians should consider prescribing off-label medications such as blood thinners after having an informed discussion with the patient about the risks and benefits.

“We need to get out of this slavish adherence to guidelines,” Dr Asad Khan said. “Physicians need to…think outside the box and offer patients a trial of treatment and see if they benefit.”

Khan himself received 21 rounds at Jaeger’s clinic, which he says resulted in a noticeable improvement in his symptoms.

“All these rules about medicine and evidence-based trials, they all go away when you face a future in a dark room and a life of disability,” Khan said, and commented on the urgency of the trials. . “No one should have to travel abroad for treatment using their savings,” he said.

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